At SWAN Australia we understand what it is like not to have a diagnosis, to be misdiagnosed (often more than once) and what it is like to have a rare disease for which there is no support group. We know there is a need to reach out and connect with other families who are on similar journeys. That is why we host networking events for families, hold workshops, and we even have a “SWAN Dads” group.

We produce a quarterly newsletter and have an information booklet stacked with information to answer some of the many questions you might have. We have an open Facebook page and a closed Facebook group so you can be part of the discussion and post any questions you think others might be able to help you out with.

We also offer a buddy system so we can match you up with another parent/carer to call if you need to reach out who can offer you some informal advice. We pride ourselves on our personalised service and will go that extra bit for our members, particularly in times of need. We strive for all SWAN families to be well supported.